What’s fair for families who care?

In 2013 Parliament passed law under urgency allowing it to discriminate against people who care for disabled family members. Angela Hart gives a parent’s perspective.

In 2013 I was full of hope. The Atkinson case had finished its journey through the Courts with the Government deciding not to appeal it any further. An announcement had been made that the issues raised regarding paying family carers would be addressed, and I, along with others in similar predicaments, had breathed a sigh of relief, expecting that all would be well now.

It wasn’t. On budget day in May 2013, the Government pushed through, as part of its budget day measures, the Health and Disability Amendment Act 2013. This removed some of my rights and limited my ability to obtain redress.

The impact on me and my family has been positive as well as negative. My family is one of the lucky three hundred or so which are eligible for and have accepted Funded Family Care. As a consequence the family income is higher than before, so we can afford to provide a better environment for our disabled family member. Problems which could not previously be addressed because of limited income (you can’t hold down a full time paid job if you’re looking after someone 24/7) are gradually being attended to. Things like faulty appliances, safe access to the house and safe flooring. We’ve been able to get out to social and recreational activities, which we couldn’t afford to do before. We were isolated because we were very poor. We’re still poor, but much better off than before.

On the down side:

My right to work more than 40 hours in paid employment is gone.

My pay rate as a Family Carer is restricted to minimum wage, regardless of the responsibility, skills and knowledge involved.

The hours I’m paid are determined by the MoH in an opaque way which bears no relationship to the hours of disability support I provide. In effect I’m paid far less than minimum wage because of all the unpaid time I have to put in.

These things apply to most of the other recipients of FFC as well.

I’m pleased that we are better able to provide for our family member under FFC, but I feel guilty that I’m one of the lucky few. The legislation has permitted a policy which continues to discriminate against family caregivers.

If you look after your severely disabled spouse, you can’t be paid under FFC.

If you care for your severely disabled child under 18 you can’t be paid under FFC.

If you care for a relative who isn’t labelled by the MoH as “high and complex needs” you can’t be paid under FFC. In spite of the fact that your relative may require many hours of disability support.

My friend looks after her seriously disabled partner. He doesn’t want anyone else to take care of him, and that should be his choice, if she’s willing, which she is. But the price of that is their financial poverty. Their relationship is rich and that’s what matters most but why are they punished financially?

Another friend takes care of her adult child, who has the mental age of a toddler coupled with a damaged body. He needs help with just about everything but she’s only paid for a few hours a week under FFC. She can’t do other paid work because of his disability support needs. She loves him and looks after him but she’s penalised financially for that.

It’s no wonder there are only 300 or so families getting Funded Family Care, the process to get it is difficult and degrading, and then you are likely to get only a few hours paid, when your Needs Assessment and Service Co-ordination agency makes its decision on what your needs are. The decision making is not transparent, there is no independent appeal process and you are expected to be grateful. The Health and Disability Amendment Act 2013 removed the right to challenge Funded Family Care decisions in Court or with the Human Rights Commission or Human Rights Review Tribunal, so when a poor decision is made, it is the family and the disabled person who must live with the consequences.

You have to wonder about the quality of the decision making when comparatively few disabled people are allocated 40 hours per week of Funded Family Care. By definition, those disabled people eligible for FFC have high and very high needs, so they need a lot of support, usually around the clock.

Families have always filled the gaps for their disabled members as well as they could. The question is whether the size of the task the Ministry of Health is expecting families to manage unpaid is reasonable, given that it seriously reduces or prevents the ability to take paid work to support the family financially. It’s a long time since women were expected to be at home to raise their children, or to care for elderly parents, rather we expect them to go out and earn money for their families now.

A mother in my neighbourhood has a seriously disabled child. He’s school age so she’s not eligible for any payment. Yet the demands on her time are far greater than those on other parents. It means the family income is lower because she can’t go out to work, as many other mums need to do these days. Is that fair?

The lack of a written constitution and the ability of the executive arm of our government to avoid the conventional checks and balances by pushing legislation through under urgency on budget day sanctioned all this injustice. We need not only to fix it, but also to make sure nothing like it ever happens in our country again. We must learn from this.